Noa is the daughter of Yaron and Gally Peled from Israel. The Tel Avivi University first contacted me for information on MSUD, and then referred the grandmother of Noa to me. My first contact with the Peled family was on June 16, 1999.
Our Noa was born on March 31, 1999. She had all the classic symptoms that other families have experienced, and was diagnosed with MSUD on her 10th day of life while in the hospital. The diagnosis was determined very quickly (although it seemed like ages those days), thanks to the professional staff in the hospital.
Life at the beginning (first 3 months) was a bit difficult - getting used to the idea, the stress in the hospital, and it seemed like a very big challenge to balance her amino acids. In addition, it wasn't easy to make her eat, and she vomited a lot.
In Israel there are about 15 children with the disease, therefore, there are very few doctors who have a specialty in MSUD. We learned how to treat her from our doctor in Israel with the help of doctors and nutritionists from the U.S., London and Paris.
We owe a special thanks to Joyce, who supported us from the beginning of our story. She immediately answered every e-mail we sent her, and we learned and gathered a lot of strength from her. The Newsletter also really helped us to gain the confidence that we were doing all we could, and were being kept up to date.
After 3 months, it got better. Noa stopped vomiting and her development went very well. Noa is now 10 months old and life is normal. Sometimes we forget she has a problem. She is an amazing girl - laughing constantly, never crying and keeping her self busy all the time. And she is s-o-o-o pretty.
The only problem we are facing at the moment is her appetite. Noa doesn't like to eat! If it was for her to decide, she would stop taking her bottle after 5 minutes. So we make many efforts, including singing and playing with her while eating, to get sufficient protein and calories into her.
We are also trying to give her some fruits, vegetables, potatoes and pasta, but we can hardly say that she is 'jumping' for it. We hope it won't be a bigger problem in the future, and that she will eat enough.
It took us some time to realize that the appetite problem is a symptom of unbalanced amino acids. Now we know for sure that it has a connection - when her amino acids are not balanced she refuses to eat at all. But neither is she a big eater when they are balanced.
Like other families, we still have a fear of illness. Till now Noa hasn't been sick, and we are afraid of the first illness, which eventually will come. We would say to each other that all children experience problems, and so does Noa.We especially want her to grow up like every other child (though she is especially beautiful and cute) knowing she has a problem and not a "disease."
We want families to know that we live happily and we would like to help Joyce to persuade others to write for the Newsletter. The Newsletter is a main source for learning and help for our children. To you Joyce - continue in your mission, your work is very important to us.
- The Peled Family